We had a nice day out

My daughter came over from Adelaide and we took Mum on a few outings. We went to the seaside town where she spent all her holidays from 1926. Her father had a holiday house there and a boat called Fiesta. She had fun walking on the beach and having an ice cream in the main street.

We went to Mount Kembla pub for lunch and it was great. She ate all her steak and vegies. We also went to Mount Keira Lookout.

I'm sure she enjoyed herself and she's remembered these outings for a whole week. I hope she keeps remembering them, because she sure as hell never knows what day it is.

She hit me again

This afternoon I was trying to show Mum how the plastic medication pack works. She takes vitamins, fish oil, Macuvision and Crampeze - no prescription medications.

Again and again I said, "It is Thursday. You need to open this plastic lid and take the tablets in there." I closed the lid and tried to get her to find Thursday's compartment again.

She couldn't. So I took the vitamin pills out and handed them to her. I said, "Before you go to bed, you have to take the Thursday night pills."

I tried to show her where to find them. I repeated myself over and over again. "It is Thursday today so tonight you need to lift up this lid and take the pills inside there."

She didn't know what I meant. She kept asking where the bottles of vitamins are (I hid them in case she overdoses). She said she'd take them from their original bottles. I said no, you need to take them from this pill container that's labelled with the days.

She's had the pill container for years. She's always used it properly. She's suddenly got much worse.

And then she got really angry and hit me on the arm. It really hurt.

I shouted loudly, 'DON'T HIT ME. IF YOU HIT ME I AM NOT GOING TO LOOK AFTER YOU.'

I am sure the neighbours heard me shout. I was SO upset. I was thinking, how the hell can I take her to live at my place if she is going to get violent every time I try to explain something to her?

OMG, I don't know what to do. I feel so alone.

Out of hospital, no answers

Four weeks in hospital and the geriatrician claims she does not have Alzheimers or any major form of dementia. What??! I am living Alzheimers from the Front Row. I know what's happening. All the nurses told me she was constantly confused, had no idea what day it was or even whether it was breakfast time or bed time.

I will never take her back to that doctor again. It's unbelievable. The G.P. read out her findings to us.

The next day, the physical therapist visited the house and I told him what the geriatrician said. He said he had the Alzheimers test in his bag of tricks and would see what result he came up with.

So he gave her the test which lasted over an hour. It was very comprehensive. There was very little she could either do, or remember. She couldn't even tell him how to make a sandwich - she started with "I'd get a knife"....she has a frightening obsession with sharp things. When he asked what she'd do if she was cooking on the stove and the doorbell and phone both rang, she did not say "I'd turn off the stove".

It was clear to him that she is a danger to herself alone in that house. He had a talk to her about moving to my place. She agreed, but she won't remember agreeing by tomorrow or the next day. I am just going to have to MAKE her move whether she wants to or not, before she does herself some terrible damage.

We went to see the renal specialist today. He was absolutely horrified that the was given Remeron (mirtazapine) as well as anti-convulsants that she does not need. He said what I believe, that these things are poisons and that her kidneys are barely coping as it is, without having added substances to deal with.

Thank you, Dr Cheng Wen. I really appreciate Chinese doctors with their alternative approach. Thank you for coming to Australia and for helping Mum.

Dr Wen respects elderly people. He talks to the patient, not the carer. He asks questions that show he cares. He remembers things about Mum, such as that she does oil painting.

Four Weeks in Hospital

Mum spent the last 4 weeks in 2 private hospitals. She as well looked after. But I didn't get any answers. The geriatrician not only refused to prescribe the only medications known to help with memory loss, she wrote to the G.P., and I visited him with Mum today, stating that Mum does not have Alzheimers OR ANY OTHER SERIOUS DEMENTIA as she scored 26/30 on the memory test. HOLY COW. I can't believe that doctor wrote that. Is she stupid or what? Did the nurses not pass on their observations to her? Yes, she can score well on a memory test and I think this is a reflection of her previous high intelligence or maybe the part of the brain currently affected. The nurses at the 2 hospitals where she spent the past month told me constantly that: she didn't know what day or time it was; she got lost in the corridors and no matter how many times she was shown the way back to her room she couldn't remember it; she had the idea she was in Room 10 when it was in fact Room 35 and she couldn't be dissuaded from that; she couldn't operate the taps in the shower and did not know the difference between hot and cold; she was given her pills (the ones I objected to as they were not necessary) to self-medicate and failed as she had no idea if she'd taken them or not, or what time of day or what day of the week it was; she got angry with 2 different room mates who stayed up reading until 10 pm, accusing them of reading with a light on 'in the middle of the night'; she thought breakfast was lunch, or dinner was breakfast, having no idea of the time; she never learned to operate the TV remote or nurse-call button; the nurses noticed she'd phone me four or five times in succession with the same question or piece of information; she lost her swimming costume by putting it somewhere strange and it was never seen again; and so on and so forth. And the doctor writes that she has no dementia. The doctor also wrote that she has A HISTORY OF FALLS. This made me very angry. In fact I have felt so damn angry all day it's a wonder I don't have a stroke. My mother has no history of falls. She's very sturdy on her feet; she can out-run and out-swim and out-walk me any time. She's one of the fittest people I know and she's 83 years old. As soon as she got home, she started hallucinating and believing there had been a man dressed in a suit and hat in her back yard. When the nurse came to visit her - a nurse will visit several times a week for 3 months - Mum even told the nurse about the man in the suit in the back yard. Her yard is bounded by high fences and a locked gate. If you tried to climb over them in a suit you'd rip the crotch for sure. Then she told the nurse about the prowlers and other people she thinks come into her yard. The nurse knew these were hallucinations and talked to me about it when she was leaving. Obviously, I am never taking her back to that geriatrician again. The G.P., a lovely young Scottish doctor, told me I should go for a follow-up visit and discuss my 'concerns' with Dr P. I said the last time I tried to discuss my concerns with her, she attempted to intimidate, bully and coerce me. I told the G.P. I had been to see our lawyer about the forced medications and now had the legal advice I need to protect my mother from this kind of thing. He was very shocked; he said he'd never had a patient who'd been to see a lawyer, but that he'd never force someone to take a medication they didn't want. He told Mum to throw away the evil mirtazapine which is the only good thing that happened today. He also said he was quite surprised anyone would give a tiny old lady a dose of 30 mg daily. I am so upset. I wanted advice and help with what I KNOW is her Alzheimers (since every other type of dementia has been ruled out by thorough testing). I was prepared to trial the medications that slow the progress of the disease. I wanted someone to advise me whether I should move her in with me or encourage her to go into hostel-level care. Instead I am told she's perfectly all right. Bloody hell, the incompetence of some doctors.

We survived Easter with barely a scratch

I collected Mum from her house in the morning. She came for a stroll on the beach with the dogs. The baked dinner turned out well. Mum didn't approve of my cooking methods or the meat (being the daughter of a butcher, she's very fussy). But she cleaned up her plate, then wanted to be taken home. After I took her home, she rang and asked why I had 'dumped' her there. But when I said I'd come and bring her back, she said no, she was going to bed.

So all was well. She even looked happy at the table. She ate a few Easter eggs. It's a bloody miracle.

The Easter Eggs are gone!

I dread Easter. It seems to make Mum appear very evil, like she needs an exorcism or something. She gets that 'look' on her face, like she wants to kill someone, most likely me, as I'm the one 'plotting' to have her 'put away'.

She's been in hospital a month now. She's been allowed two nights at home for Easter and then she's back in hospital Monday night.

We bought Easter eggs on Thursday. Today, Saturday, she made them disappear. I had left them in her bedroom and now they had vanished. She was in a panic. She did remember buying them. I looked everywhere. I looked in each room methodically. I tried the fridge and the bathroom cupboards. I remembered to look in the bin. Not there. She wanted to go and buy more, but I said no, they'll turn up eventually so people will just have to get them a few days late. Also, the total cost was around $60 and I couldn't stand to think of her wasting any more money. She was very angry that I wouldn't take her to the shops to buy more eggs.

Of course I was kicking myself for not taking charge of the Easter eggs and keeping them at my house. I never seem to remember to do the sensible thing until some disaster has happened, then I think, why didn't I do this or that? Too late.

She hadn't been home an hour when she did something weird. I'd got her some UHT milk in a cardboard carton. You have to unscrew the lid and then pull the little plastic cover until it comes off. But she didn't know how to do that. Instead she took to the milk carton with the scissors, hacking into the side of it and spilling most of it in the process (luckily over the sink).

I have to take away all the scissors. This is the second scissor incident. The last one was when she hacked the inside lining of a leather handbag worth over $100 because she didn't know she could get her purse and glasses out by undoing a different zip. She thought her things had fallen through the lining.

I'll try taking away the scissors, but she'll notice and she'll be very angry with me. She'll probably walk down to the shopping mall and buy another pair.

Anyway, late Saturday she called and said she found the Easter eggs. Goodness knows where they were. I couldn't see them anywhere. But it's good they've been found.

Now we have to somehow get through Easter lunch without an outbreak of extreme animosity.

Good luck with that.

Why I hate mirtazapine and E.E.G.s

Holy cow, I might as well go downtown and get Mum a spliff and some yeyo. We don't take drugs, doctors. Get it? No, you don't.

Which part of 'WE. DON'T. TAKE. DRUGS" don't you understand?

I took Mum to a geriatrician to get a definitive diagnosis. I think she has early Alzheimers. Multi-infarct dementia has been ruled out by the MRI scan. She doesn't have Picks disease. Her kidney problem isn't too bad (it affects the red blood cells which carry oxygen, hence dementia possibly caused by that). The doctor put her in hospital allegedly for THREE days and it has now been THREE WEEKS.

I hoped for some thorough tests to be done. I hoped for advice on how to manage her behaviour. She had a couple of 'bad turns' on 28th December. She kind of spaced out and stared straight ahead. These may or may not have been seizures. There are other things that cause these symptoms. She wasn't connected to an E.E.G. when she had these turns so no-one really knows. She's never had them before and she's never had them since.

So firstly the doctor puts her on Mirtazapine. I tell the nurses she is not to have it as I have guardianship and I say no, but they order it from the hospital pharmacy anyway. An Australian government website warns about mirtazapine, also called Remeron:

http://www.tga.gov.au/adr/aadrb/aadr0310.htm

Mum has kidney disease. The renal specialist told me to warn any G.P.s she sees that she is not to have any drugs. In the case of antibiotics, they are to be half strength.

Mum is having 30 mg of Mirtazapine every night. This is double the dose recommended for the elderly. It is causing her to have diarrhoea.

SHE DOES NOT HAVE A DEPRESSIVE ILLNESS. On the day the doctor asked if she was depressed she said 'yes', but she meant 'SAD', not depressed. There had been a family falling-out. She is NOT DEPRESSED and take note geriatric specialists and G.P.s dealing with the elderly in early dementia, you cannot take their answers as gospel. They are unable to answer any question accurately. They really have no idea and are giving you the answer THEY THINK YOU WANT. For God's sake ask the CARER for a more accurate answer.

As for the claim by nurses when I said I don't like this drug that she needs it to increase her appetite, it would be impossible to do so. Although she is thin, she eats like a horse and has the appetite of a hyena. Five minutes after we've had a huge lunch at the club she's saying "We have to eat, I'm starving." So the hell with that excuse.

So why is she having this dangerous and possibly deadly drug mirtazapine at double the usual dose? You tell me.

As for the alleged 'epilepsy', what nonsense. She has had no ongoing seizures. On the day she had the two 'funny turns', which may or may not have been seizures, there may have been factors that lowered her threshold for seizures such as being unwell or having low blood pressure or low blood sugar.

Why the hell would you medicate something that's not there? As for their dodgy E.E.G. result, you could drag in anyone off the street, give them an E.E.G. and nine times out of ten there will be an 'abnormal' result, sufficient to persuade a doctor keen to give business to the multinational drug dealers to write a script for Epilem.

I would guess that MOST elderly people would have an alleged 'abnormal' result. And yet no-one has noticed them suffering fits. This is because during an E.E.G. the brain is tormented by the person being made to hyperventilate and having strobe lights flashed at them. These things don't happen in normal everyday life. Strobe lights can induce fits in a person who most definitely does not have a seizure disorder. To hell with E.E.G.s, they are one step down from witchcraft if you ask me.

The specialist told me Mum could go into one of these (alleged) seizures and not come out of it alive.

What garbage. I can't find a single case of someone dying of a complex partial seizure, even if that is what she has.

I don't know what to do. I've stopped them giving her anti-convulsants and will get her off the mirtazapine slowly and carefully at home. I don't want her having it for one more minute, but it seems if I don't let them continue it they won't give her the tests that she needs to get on the nursing home waiting list, just in case things ever get desperate enough. The doctor suggested if I deny my mother 'treatment' there's no point in having her in the hospital. This is almost blackmail. She knows I'm desperate for help, advice and a diagnosis, but she won't let me have it unless I allow my mother to be tortured. And she is. She wakes up feeling groggy and terrible every day and sleeps through the mornings. Her memory has got worse. She's frightened. When they gave her the one and only anti-seizure pill, she went into shock, shaking all over and feeling weird in the head. Before the nurses responded to her buzzer she rang me and said "Come quickly, they gave me something and I'm terrified, I think I'm going to die."

The 'F' word is right on the tip of my tongue but I am trying hard to be polite on this blog.

I was so angry when I got home from the hospital last night, after the doctor again trying to cajole and bully me into agreeing to anti-epilepsy drugs, that I slammed the front door and swore so loudly that the next door neighbours slammed their front door and the Macedonians across the road came out onto the footpath.

"All your base are belong to us"

Unfortunately, at the moment, yes. But if you don't behave, I will just sneak her out of the hospital without even signing out and take her home, because I've had enough, and so has she.

I am now so paranoid about doctors and hospitals I doubt I'll ever take Mum near one again.